I got a call from a nurse at the NH yesterday--according to the PA that I've bumped heads with in the past, Mom has an abscess in the incision site from her second hip surgery and is running a fever. There is also a "change in her mental state." She needs to be sent out--either to the hospital or else to a doctor's office to have the abscess drained.
With regard to the "change in her mental state," the psychiatrist was just there last week to evaluate her and adjust her medication. Of course there's going to be a change if she has an infection; there's also going to be many changes even without an infection. No big surprise there.
I asked how high her fever was and the answer was 100 degrees.
For those of you unfamiliar with my Mom's situation, she is 89 years old, has vascular dementia, and has had two hip fractures that were both surgically repaired. She had a heart attack at the time of the first fracture. No cardiac events during the second, but the break was worse and the incision site became infected. She has always been an anxious person, and with the dementia becomes extremely agitated, hyperventilates, etc. when you take her out of her comfort zone. She doesn't even go out in the courtyard anymore. After her second rehab she could still walk, but her balance is shot so if she tries to get up she just keeps going and falls right over. So now her time is spent mostly in bed with a few hours here and there sitting in a wheelchair.
I refuse to get in another battle of the wills with this PA, so after I told the nurse that Mom was not to be sent to the hospital (or anywhere else for that matter), I called social services to get hospice on board. I had a meeting yesterday to sign the paperwork and a hospice nurse will be evaluating Mom tomorrow (or as soon as they can get the doctor to give the order).
I'm heading off to the NH in a couple of hours to see Mom and check her leg out for myself. Wish me luck, okay?
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The hospice team is very good--when my 96-year-old neighbor was dying I went to visit her at their inpatient facility. She looked so comfortable and at peace, like a little angel just waiting to get her wings
The building that they use for inpatients used to be my high school before it was turned into the hospice. If Mom has to go anywhere, I'd want her to go there--it really is a lovely place, and the people who work there are wonderful.
I'm sad, but in a way I am relieved--if Mom gets accepted to hospice, she'll have a whole team looking out for her and I'll have support, too. I don't know if we're coming to the end yet--there are residents at the NH that have been on hospice care for years! Mom is feisty and a fighter and may not be ready to go anytime soon
I just know she's had enough of hospitals and surgeries and painful procedures, so we'll take things as they come.
Kern, sorry that Mom is having difficulties and you bumped heads with the PA again but I am glad that Hospice is on board now. They are amazing and you now have an army with you. Mom is one of those that has been on Hospice almost a year now. Next week is her annual review. If anything she is better because of their attention to details and comfort care. I am better because of the social worker who is always there for me. It's nice for somebody to call and ask how I am!! I even switched to the Hospice doctor who comes into the facility to see Mom. Not to mention the great CNA that showers Mom and the amazing volunteer who comes once a week. And Mom's nurse added to that list. I feel like I have an army there and it is not all on my shoulders.
This fork in the road lead you in a good direction
My roommate and I just returned from a wonderful visit with Mom--since yesterday the abscess opened on its own and is draining. Mom's temperature is now 97.8. They're giving her Tylenol and oral antibiotics. She had her hair washed and set this morning. She was smiling and happy and told us both how beautiful we looked while she ate her ice cream.
If I had allowed them to transport her to the hospital she would be in a panic, not knowing where she was or why all these strangers were poking at her. As you know, hospitals are not good places for dementia patients. Just the ride in the ambulance alone is enough to cause Mom to decline.
Today, instead of a nightmare at the hospital, I was blessed with another memory to cherish and the knowledge that I made the right decision. It is a good day.
Hospice still has to evaluate Mom before they get on board--it now looks like that will happen on Monday instead of tomorrow. I don't think they will have a problem accepting her, but if they say she's not ready yet then at least I will know the proper steps to take later on. And I honestly think her NH doctor would be secretly thrilled to have the Hospice doctor take Mom (and me) off his hands!
Kern, your last comment made me laugh He probably went home and did a preliminary happy dance. I would be surprised if your Mom is not accepted. I took a chance with Mom because of just the reasons you did. I didn't want her in the ER/hospital again. You are right, it only makes them more confused and their cognition decline. I am so glad you had a good day with your Mom and such a good memory to keep. There are moments of joy to gather!! Hope you get some rest.
You were right, Deb--Mom was accepted to Hospice today! The hospice social worker actually asked me how "I" was doing
I suspected Mom had a UTI along with the abscess at her incision site and was going to ask the doctor to order a urinalysis today, but guess what? The Case Manager/RN that came to evaluate Mom for admission to hospice already handled that AND got them to do a culture AND said forget IV antibiotics she'll just tear out the IV. So Mom will have shots for her antibiotic-resistant UTI for the next five days.
I know some people reading this may not understand, but my roommate and I have been weeping tears of joy and relief all day. It's like you said, Deb--I think my Mom might actually do better and live longer with hospice on board. It's ironic that sometimes your loved one has to get worse in order to qualify for the care that ALL of our loved ones deserve.
While I was typing this I received a call from the NH that Mom was being put on IV antibiotics because their pharmacy doesn't have the medication in injectable form. Huh? I told the nurse that Mom was approved for hospice care just today and that I thought this was something she needed to discuss with the hospice nurse, since Mom has a history of pulling out her IVs. Okay, she'll find the phone number and talk to them, sorry, no one updated Mom's case notes, etc etc.
Pinch me--I must be dreaming After over two years of being ever-vigilant, asking over and over for UTI tests (your Mom refused to give us a sample was the standard excuse), literally begging for cultures (okay, but it will take at least 3 days to get the results), and watching Mom tear out her IVs, you mean all I have to do is invoke the "H" word (Hospice) and they get with the program? Be still my heart!
I know I'm going to have to adjust to not having to deal with all this stuff myself, but I'll gladly overcome my "control issues" if it means I can just spend my time with my Mom. That's the whole point, isn't it?
Thanks again for everything you do here, Deb--I'm most grateful for all the wonderful advice you've given me
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Well, I stopped doing the happy dance about 20 minutes after my last post, when I got another call from the NH from the Nursing Supervisor who had just tried--and failed--to put an IV in Mom. What?
I explained the situation and told her no IV (she knew Mom would just yank it out anyway). I asked her to please call hospice because I wanted Mom to get the antibiotic injections as originally ordered. She said that she found the paperwork approving Mom for hospice and that they have a new nurse practitioner who changed the order to IV.
Right hand, meet left hand. Do either one of you know what you're doing? Sigh.
I'd be a whole lot angrier if Mom hadn't just been approved for hospice care this afternoon. I am trying to be patient.
So then I waited about an hour before committing what will hopefully be my last act of micromanagement: I called hospice to make sure the NH had called them. And yes, they did. They told them I had refused IV antibiotics for Mom. So I had them add another note to Mom's hospice file that said I wanted her to have the injections that were originally ordered, but no IVs. Her case manager will sort it out in the morning.
Kern, when it gets rolling those bumps will disappear. I have had the same experience. I talked to the nurse about Mom's blood work for depakote toxicity. Up until that point I had to remind, beg, plead, or take Mom to the doctor's office lab myself to get this done. The nurse called me back in 15 minutes to let me know the levels were normal. The doctor had seen the need, ordered the test, and the results were already back. Several times they have "beat me to the punch" and it feels so very good.
It is very important that the NH calls Hospice because they have an amazing notation system that tracks the patients. If Mom falls at 11 PM but a nurse visit is not needed, it is noted and Mom's nurse checks her first thing the next morning without me doing anything. The nurses and doctors are on top of things fast. I wish care facilities ran their organizations like Hospice does!! They could surely take a lesson.
The first time my social worker talked to me and ask how I was I almost fell over. ME?!! I answered honestly at the time... "I don't know because I have not thought about that lately!" He told me to think about it and we would talk later.... once a week for as long as I need for the last year. He probably knows more about me than anybody else! He ask
I had the same confusion at first until I got all the notes on Mom's ISP to explain what I wished. I talked to the case manager on duty that night and Mom's case manager called me back bright and early the next morning. We got all the notes necessary on file and no more problems. They truly get it and you don't have to explain everything to them. Stuff just happens. It's not perfect but it's such a step up from standard that it's wonderful.
Speaking of which, I need to find out when Mom's assessment date it.